Minimally Verbal/Non-Speaking Individuals With Autism: Research Directions for Interventions to Promote Language and Communication

January 24-25, 2023
Virtual Workshop

Workshop Summary

On this page:

Summary
Videocast recordings of the workshop
Participant-suggestion publications

Summary

The NIDCD sponsored a webinar/workshop on January 24-25, 2023: “Minimally Verbal/Non-Speaking Individuals with Autism: Research Directions for Interventions to Promote Language and Communication.”

This workshop reflected NIDCD’s long-standing efforts to encourage and support research focused on minimally verbal/non-speaking individuals with autism, as well as research on augmentative and assistive communication for a variety of populations. A 2010 NIDCD workshop focused on nonverbal children with autism resulted in funding opportunities and prioritizing of research projects on the topic. A follow-up to the 2010 workshop was deemed appropriate and timely to address novel interventions, research designs and methods for intervention studies, and meaningful outcome measures. The goal of the 2023 workshop was to foster the development of critical research studies addressing the varying communication needs and abilities of this population.

The presenters and discussants represented a wide range of backgrounds and perspectives. Active participants in the workshop included individuals on the autism spectrum (both speaking and minimally verbal/non-speaking, with a range of communication skills), parents of minimally verbal/non-speaking autistic individuals, researchers, and clinicians and educators with many years of experience in the field of autism. In addition, there were presentations about interventions and research findings from non-autistic but non-speaking populations, including those with co-occurring cognitive disabilities, to allow cross-fertilization of approaches to inform autism research.

Informative, lively, and civil discourse characterized the meeting, which involved not only the invited presenters, but more than 200 individuals viewing the webinar via a live NIH videocast.

Several themes emerged over the two-day meeting, including the need for research to address:

Participatory research. Engage non-speaking individuals and other stakeholders as collaborators at all research stages, including conceptualizing, planning, implementing, interpreting, and disseminating research.
Improved technologies. Encourage research and development of: augmentative and assistive communication (AAC) devices that incorporate recent advances; new augmentative tools with age- and gender-appropriate speech generation; and artificial intelligence (AI) or other advanced technology to better convey the social nuances of communication (e.g., sarcasm, emotion).
Heterogeneity of this population. Characterize possible subgroups of minimally verbal/non-speaking individuals with autism to guide intervention options. Seek strategies for determining individual and stakeholder needs, given heterogeneity.
Development of or use of new research designs that can personalize interventions. Identify support needs for those of different ages and varying abilities. Develop novel and effective interventions for individuals unable to use or unsuccessful with AAC technology, such as approaches using sign or gesture. Seek methods for identifying fast, slow, or non-responders to support a precision medicine approach to efficiently match individuals to effective treatments.
Novel areas of intervention development. Focus on interventions and support strategies for increasing independent usage of AAC devices for full communication of thoughts and ideas. Address literacy development, receptive understanding, motor functioning, and other related skills.
Assessment for and outcomes of intervention. Develop and promote means of assessment of receptive understanding, cognition, and brain and behavior readiness. Identify meaningful intervention outcomes that consider developmental stages and incorporate input from minimally verbal/non-speaking individuals and their families.

NIDCD, possibly in conjunction with other NIH institutes that support autism research, will consider next steps in addressing the many research opportunities discussed at this workshop.